Playing ostrich?

It doesn’t matter what it is, until we admit we have a problem, all too often, that problem doesn’t exist. Sound familiar? It’s OK, all of us do it. Most of the time, it really doesn’t matter, because, in an odd way, we’re right. Few of us actually go through life-threatening situations, we don’t know what it feels like to be in the real danger of dying, either from our own bodies or from someone else’s. All we have is our imagination and our own life experiences to base anything on. Both of those vary widely from person to person. Some will panic, over what others will see as tiny or irrelevant, while others trudge on, even when everyone else, can see the knife sticking out of their back, they go on as though nothing is happening. In most cases, those huge problems are only in our mind, not they symptom, or issue we’re experiencing, that’s real enough, it’s the belief that its a life ending problem, that’s what we often create ourselves. It’s all too easy to take something tiny and turn it into something much more major, not because we are hypochondriacs or the ultimate perfectionist, who can’t deal with the smudge on the carpet, but simply because we are human. I don’t claim to understand the full in-depth psychology behind it, I’m not a doctor, but part of it goes way back to our beginnings and has something to do with a miss guided use of the flight or fight instinct. Taking something tiny and blowing it out of proportion, isn’t really dangerous to anyone. Annoying to those around us, but not dangerous, but what when we do it the other way around. When we dismiss, tell ourselves that it’s nothing, not important at all, when it actually, might be.

I do it, and I admitted it yesterday right at the end of my post. I honestly, thought I was having a stroke and what did I do, nothing. I don’t even remember worrying, once I was through those first few minutes. All I know is that I did what I did on Sunday night, I sat there, mentally checking what was right and what was wrong, then created some kind of embedded function that throughout the answer, “I’m OK”. I may have been ill the majority of my life, and without a doubt, know my body better than anyone else on the planet, but I don’t know what it feels like to be dying. Yet still, I consider myself qualified to decide that I didn’t need medical assistance. To some, that decision would equate to madness, to others, probably those who also live with chronic illness, it will equate as a logically acquired assumption. Clearly, I have proved that I was right, as I’m still writing, it wasn’t a stroke. I have searched for it, but I can’t find a post which I think I wrote back at the end of 2013. I remember writing it for two reasons, firstly Adam couldn’t believe that I did nothing, not even call him, and also because a couple of other people had gone through the exact same thing. Briefly, it is a case of being lain in bed, convinced in a way that I can’t explain, that I wasn’t going to wake up again, ever. It has happened several times and the oddest thing about it, is the total calm, a peace that I’ve never felt any other time. It’s not a case of wanting to die, it a feeling of not being able to avoid it. There’s no pain, nothing to explain it. I mention it now, as it’s a perfect example of a couple of things. The way our brains creates things and the total futility of calling a doctor. What would they do apart from laugh at you, as all you can say is, “I’m about to die”. If you have been as ill as I have, for as many years as I have, and had to fight for years, to get a diagnosis that explained everything that is happening to you, you wouldn’t call the doctor either.

Don’t get me wrong, I have had some really good and some really helpful doctors, I have also met up with some totally horrid and inhuman, mocking monsters. Unfortunately, they are the ones who jump into your brain when you are caught in those few seconds, where you know you have to make a choice, you either scream for help, or you shut up, wait and see, and just hope. It may be wrong to let a few bad apples, make you honestly put what you believe could be your life at risk, but that is the effect of those monsters. I know I am not alone in worrying about turning up in an emergency room, just to be patronised and sent home feeling really stupid, but there is another problem on top of that one, and it’s bigger. As my health deteriorates, I don’t want to be known for shouting “wolf”. When I genuinely need help, I want them to willingly give it, without the attitude of “Oh! it’s her again”, possibly delaying the help I need. If I were to call for help every time something truly happened, that on the surface appeared like an emergency, I would by now be banned from calling them. The relationship that you have with the medical profession when you live as I do is both delicate and important. If that isn’t enough, I have other things to consider on top.

I recently wrote a post explaining why weekends are a huge consideration as to if you call for assistance or not, but the availability of care that the weekends produce is also to some extent, there at night time as well. Clearly the emergency care is there regardless time or day of the week, but if it isn’t a total emergency, if you can wait until the morning, then it’s clearly better to wait. Stay at home, you will spend the night in your own bed, which without the slightest doubt, is far more comfortable, than a hospital trolly, as the chance of a transfer to a ward at night, is highly unlikely and the chance of there being transport to take you home again, even more unlikely. Because I can’t get up and down the stairs to our flat, I need either to be carried or taken on a stairclimber, in some cases, this might not be a problem, but in Glasgow it is. If I had got it wrong, and I was fine, I would have to wait, if I’m lucky, not in one of their hard wheelchairs, for the morning. Getting home would be down to the patient transport system, would collect me at some point during the day in between then running people back and forwards for consultant appointments. Who knows when I would eventually get home again.

It doesn’t matter how serious my gut instincts says something is, I have to stop, I have to think it through and decided about all of this, as part of my equation, as to do I call for help or not. Clearly, my health comes first, if I went through my major equations and came up with, I am having a stroke or a heart attack, like anyone else would get Adam to pick up the phone and make that call. If I had the slightest doubt, add in everything above, and my equation totally changes and doubt is inclined to win. I will go over and over everything I am feeling, I will work out for myself if I can stay here or not, but I have to admit, any time of day or night, all of this does have a bearing. It was a large part of the driving force that took me off my feet and into my wheelchair. The whole idea of having an accident is one I have lived with for years. But when the odds rose to the level, where an accident being more likely than not, it was the hospital bit that worried me far more, than the damage done to me. For me, that has now become my personal “Problem level”, not to be crossed. If something doesn’t include “hospital” in the answer, then it’s not a problem at all. Am I being an ostrich, I don’t think so because, I can, actually give a rational argument as to why I have reached my conclusion. As long as I assess my health first, then use the rest of my argument to grade it, well it’s got me this far.

There is, of course, one other argument, that is hidden in here. Not just am I right or wrong, but in some ways a bigger one, is it right or wrong, that anyone should have to even have to bring the quality of the health care system, into their reasoning, when it comes to their health.


Please read my blog from 2 years ago today – 24/11/2013 – Future shut down

I guess able-bodied or not we all have fears and strange things that fill our minds for no reason at all. Understandably for someone with a progressive illness, I dread for what is to me, the start of the worst…..




This is day 3 so I can now say with confidence that I have a mild dose of Bronchitis, the important but odd word there is “mild”, I’ve never had a mild dose in my life. I can only guess that my meds for my COPD is holding it at a low level, so I am just going to wait and see what happens, not point screaming for antibiotics if it will heal itself. I was really surprised that I didn’t get it last year, with my economy drive with the heating, I was just waiting for it to happen, as I know that whenever I have had to live in a cold house, I have always had 2 or 3 bouts over the winter months. This is the first bout I have had since we moved out of first home together, it was rented, freezing cold, with windows that didn’t fit and no heating at all, apart from the living room fire. Other than that and the weird fact that only after we rented it did I discover that there wasn’t an oven, just a hob, it was lovely, we were actually really happy there and it was our first home, the place where we started our life together and got married from, so despite the unseal floor boards and odd things we kept finding in cupboards, we loved it. We lived there for just over a year and despite all the flaws of the flat we were so happy and so full of plans for the future, 16 years on and life has no resemblance to any of those dreams at all.

Our biggest dream was that buying our first home, the one we are still in, was just a stepping stone, we had this idea that we were going to buy a home in the middle of nowhere. We wanted a house where we couldn’t see our neighbours and our views would be either of the sea or mountains preferably both, at the time it seemed so possible, we both were working the property market was good and it felt like all we had to do was to improve this place, which we have, then sell up and move, doing it all over again, until we could afford what we wanted. Now, well it will never happen, but it doesn’t stop us dreaming. None of us can see the future but 15 years ago when we married, I really thought I could and I really believed in the words happy ever after. Don’t get me wrong, we are very happy, but it’s not the fairytale that I honestly believed it would be at the time. Everything about Adam and I were so different from any other relationship I had been in, and together I honestly believed that the world was our oyster and our future charmed, in comparison to my past, life was a pure joy. I guess I was hoping for too much, as my past wasn’t gone just quietly waiting to strike me down big style.

You would think that once you have that fought for diagnosis that you would then stop looking for things that are wrong with your body, but I have realised recently that that just isn’t true. When you have spent so many years being told there is nothing wrong with you, well you get into a habit, of searching and questioning every small thing that happens. I spent nearly 20 years making lists in my mind, checking every section of me and questioning things that were probably perfectly normal to everyone else in the world, not having anyone who believes that you are ill, actually does turn you into a hypochondriac. It is actually human nature to assume that if someone else can’t find it, then it has to be something really serious, something they have either never seen before or is so rare that they are just missing it. You start to grasp at straws, to read everything you can find that might be in any way similar to what you are going through and when you do go to the doctor with a diagnosis in your head, you don’t tell them, as then they too will think you are a hypochondriac, mind you most of them already do. You spend so many years tied up inside and unable to get anyone to believe, that even once you do know and someone does believe, well you actually can’t fully stop doing it.

There is a fine line between listening to your body to be sure you aren’t pushing yourself too hard, or doing anything that will make you worse for a few days, or listening to your body and deciding there is something seriously wrong, when there isn’t. It’s nearly 14 years since I was given my diagnosis, one so serious that you would think that I would just accept it and work with what is known, but I can’t stop just checking, picking on something I feel or a pain that is somewhere new and starting all over with ‘the what is that’, what could it be and eventually finding a name I can hang on it, with a large question mark attached. Last year I found my COPD and gallstones, so maybe it isn’t all bad, as at least we are all prepared for the future they bring, but I just can’t stop wondering about this and that, my mind is never totally a rest over any of it. In an odd way, the NHS has taught me how to be a hypochondriac, because it was the only place where I could and sometimes still can, make any logical sense, of what my body does to me. I expect I will be far from the only one who will totally understand how being chronically ill, somehow it keeps you looking for any other possible illness just waiting to be diagnosed and you just can’t stop looking as that is how you have spent your entire life. I don’t like the hypochondria, but it is the only one available, we didn’t and don’t make up the things we feel and find, I just think we are quicker and more tuned to noticing changes that other don’t and yes we self-diagnose but only because we have learned that doctors just don’t always listen and don’t know everything.

Please read my blog from 2 years ago today – 27/02/12 – Rehab 

I actually had a visitor today a real human being walked through my front door. She didn’t bring any gift, even though she is the first person to visit here in 2012, she brought 2 hours of questions and checks. I gave in trying and hoping that the increased pain levels I have had for the last few weeks would go away

(At this point I was calling my form of MS RPMS instead of PRMS this is simply as the doctor who gave me my diagnosis as “relapsing progressive”, instead of what I now know is the accepted version of “progressive relapsing” which I have used since I was corrected.)